Hi all. I haven't been on here in years. Which means I was doing well. I'm back because, in short, I've had a flurry of increasing weird stuff 7 years after initial diagnosis (and mis-diagnosis of MS prior to that). Hips started aching horribly. Began tripping and fell twice. Threw back out (with intense pain). Then tried to run a 5K with daughter and knees gave out left and right. Then my neck was extremely painful and could barely move it for about a month. Now that is gone. Then two seemingly random knuckles on my left hand started to ache. Now that is gone. Now today, I can't walk more than a few blocks without feeling like I'm going to trip. Poor foot clearance on left side. IN SHORT - I've never had a relapse. All the typical MS symptoms are back. Could it be a Lyme relapse? Thank you all!!
Posted by coulditbelyme (Member # 48276) on :
Oh, and I forgot another one. Insanely dry eyes. Mostly on the left. My eyes would and sometimes still do glue shut at night. Weird!!
Posted by TF (Member # 14183) on :
Yes, when I had lyme, it gave me severe dry eye and severe dry mouth. I had to doctor for the eyes and for the mouth.
It actually dried up all my mucous membranes in my body causing quite a few other problems.
Sometimes lyme manifests in an MS-type manner and sometimes in an ALS-type manner, and sometimes in a more traditional lyme manner.
Still, it is lyme. So, it sounds to me like you are relapsing. Many lyme specialists believe that MS is lyme period. If you want links on that, let me know.
Running is aerobic exercise and aerobic exercise lowers your immune system for well over 24 hours. So, right now, aerobic exercise is NOT your friend. Go to one continuous hour of weightlifting, a full body workout, every other day. Burrascano says that is essential to strengthen your immune system to prevent a relapse. (Page 31 of his Guidelines)
It really worked for me.
Have you had any medical procedure (colonoscopy, etc.), or stress, or steroids, etc. that could have brought this on? They give steroids to you and you don't even know it during various medical procedures.
Your symptoms are classic lyme--first hip pain, then a severe neck issue, then moves to some knuckles, then somewhere else. The neck is really classic lyme.
Did you have coinfections when you had lyme? It is possible that it is a co that causes the dry eyes and mouth. I never could tell. But I sure was glad when it went away.
My eye doc wanted to put plugs in my tear drains. You can try that. They can put temporary ones in to see if it helps you.
If that helps, you can have the tear drain cauterized so that it is permanently shut. (I wouldn't do that in your case. My hubby had it done and it really helped his extreme dry eye. He doesn't have lyme.)
Posted by Tincup (Member # 5829) on :
Sorry to say it could be a relapse. Or, were you bitten again? Either can cause those symptoms. When symptoms move and change it gives cause to look for Lyme disease.
The good thing is, you've been there, done that, so you are worlds ahead in dealing with it. And you had success previously. That's in your favor.
How can we help you?
Posted by Tincup (Member # 5829) on :
BTW- This tends to be a very depressing time for people- facing a possible relapse. If you need to talk or kick something, please do. Just don't lay down and quit. OK?
Posted by coulditbelyme (Member # 48276) on :
Beautiful people! Thank you so much for the responses!! I can't believe I didn't put two and two together before today! Now... To find a doctor. The dear physician that helped me years back in Wisconsin is since retired. If you happen to know any in the Chicago area please, please p.m. me!! I can't thank you all enough!!
Posted by coulditbelyme (Member # 48276) on :
Beautiful people! Thank you so much for the responses!! I can't believe I didn't put two and two together before today! Now... To find a doctor. The dear physician that helped me years back in Wisconsin is since retired. If you happen to know any in the Chicago area please, please p.m. me!! I can't thank you all enough!!
Posted by coulditbelyme (Member # 48276) on :
One more question please... Does anyone have an explanation for exactly why stress can cause a flare up? From a microorganism point of view? And yes, I have been under a good deal of it lately...
Posted by Tincup (Member # 5829) on :
To find a doctor see the doctor referral section here on the left menu. It has docs from all over and contact numbers too.
I can't do microorganism details for you, but the immune system goes down under stress, allowing the bugs to party hardy.
Posted by Keebler (Member # 12673) on :
- Q: . . . explanation for exactly why stress can cause a flare up?
A few of many reasons:
* If exercise causes, there is a certain frame of time after intense energy output where the immune system is very vulnerable.
* The sheer neuro toxicity of lyme clobbers the master control panel and all the systems. Lyme affects every organ, every system. Sigh.
* The HPA-axis is also just fried with lyme. That's one stress connection. Detailed here:
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posted by TF (Member # 14183) on :
When I was finishing my lyme treatment, I became symptom-free in the fall.
My doc will not let anyone stop treatment when winter is coming on. He said that winter is a stress on the body. Any stress can cause a relapse.
So, he required me to stay on meds until spring! I had to take meds for 5 more months even though I had absolutely no symptoms and hadn't had any for 2 months.
A friend of mine said that as the weather gets cold, old and frail people die. She arranges funerals at the church, so she notices this year after year.
So, the body has to work harder when it is cold out (to keep warm and to do physical activity in the cold is harder than doing it in warm temperatures).
So, even winter is hard on our bodies.
However, if you have a healthy lifestyle, you can get rid of lyme and not relapse during stress. I had a very high period of stress and never relapsed.
And, I had to get epidural injections for a herniated disc. That is steroids. Still, I never relapsed. I took oral prednisone for over a month for a sinus problem. Still, I did not relapse.
So, do everything to keep your immune system strong. That includes:
getting a good night's sleep every night eating raw garlic or Kyolic eating a healthy diet doing non-aerobic exercise with a day off in between
And not doing anything that weakens the immune system including:
smoking drinking alcohol eating sugar (a soda sweetened with sugar depresses your immune system for 4 hours) using steroids or other immune suppressants (I can't even use steroid nasal sprays such as Nasacort, but everyone is different) doing aerobic exercise
Give your body all the help you can to get your immune system strong again and you do not have to relapse in the future.
Many think they can drink and smoke. I have found that lyme patients who do get lyme back very easily.
I caught every illness that came along when I was using Nasacort (a steroid nasal spray) daily for a few months. Once I read about this med online, I stopped it and went back to weightlifting. Immediately, I stopped getting whatever sickness was going around. Others are able to use these sprays, but I cannot.
So, think about everything you have in your life that helps you stay strong and also what weakens you. Change what you can. I highly recommend the weightlifting. It is almost like a miracle how that helped me and still helps me if I get drained and start catching illnesses.
I have been on LymeNet for many years and remember many posts by runners and other atheletes who really pushed their bodies. They eventually relapse and come on this board and wonder why. So, you are not the first by any means.
Posted by TF (Member # 14183) on :
Just want to add, I completed my lyme treatment over 10 years ago and I have never relapsed.
I even got bitten again and got lyme again (bulls eye and herx on day 3 of meds) but it only took 30 days of meds for me to get rid of that case of lyme.
A healthy lifestyle is what I credit for my ability to remain healthy.
Posted by TF (Member # 14183) on :
Oh, and I take a good probiotic every day. I have heard some smart doctors say that this is really important to keep your immune system strong.
So, add that to the list of "do's"
Posted by Lymetoo (Member # 743) on :
Great information TF and all! I am on vacation now with three kids and a good deal of stress (relatives anyone?). I am going to be be Peaceful and chill the rest of the trip. Thank you so much!!
Posted by coulditbelyme (Member # 48276) on :
Great information TF and all! I am on vacation now with three kids and a good deal of stress (relatives anyone?). I am going to be be Peaceful and chill the rest of the trip. Thank you so much!!
![[group hug]](graemlins/grouphug.gif)